Drinking Solution Evolution

[Ken15]

It is important for PALS keep hydrated, for numerous reasons. However, as they lose strength and dexterity in their arms/hands, it can become quite the challenge to self-hydrate. This is just a quick post to let others know where we've been and where we are now (pre-feeding tube).

We started with acrylic glasses because of their light weight; when they became too cumbersome, I rigged up a sippy cup with a long stainless steel straw and that has worked pretty well for the last few months; however, now, even that is a struggle.

Ideally, I wanted a headset with a sipping straw (so she would not have to move the straw to her mouth), connected to a hydration bag (the latter similar to what long distance bicyclists use). After a pretty exhaustive search, I really couldn't find anything suitable. However, I was able to find the fleximug; it has a flexible straw that stays in the position you set it in; thus, I'm thinking I can position it near her mouth so she just has a head movement to get to the straw. I ordered the fleximug with a 24" straw - warning: not inexpensive, circa $60.

Ken

 

[nona]

That is cool while your pALS can use a straw. I cannot due to bulbar symptoms and after similar trial and error we found the Geigerig pressure system, which is similar to a Camelback except the water bladder is under pressure so I just have to bite the mouthpiece and water comes out, rather than having to suck it out. My father attached it to my PWC so it's always with me.

 

[affected]

definitely when you can't suck and have no hand strength it's a challenge. I designed a contraption that a family member helped put together that allowed Chris to drink as it tipped the cup for him - he was able to use it right to the end as he kept a tiny bit of movement in one finger and could operate it ☺ My Chris could also only drink thickened coffee, he got his hydration through the peg, but he did like to feel he was sitting out and having a coffee and get some taste from it.
I hope this one works for you.
Nona that one you have sounds awesome!